Can I get a response ?

[whycancer]

I posted a question on 10-22-07 asking for a opinion as to whether or not you all think I should take tamoxfin. I explained that I first took chemotherapy to shrink the tumor, then had surgery(total mastectomy) and radiation therapy. The removal of my lymph nodes under my arm showed no signs of cancer in them. As of today, I am cancer free.(?????) My doctor wants me to take tamoxifen for 5 years. I'm also scheduled to have a total hysterectomy because my period came back shortly after I stopped taking chemo and I have fibro-tumors which as you know causes excessive bleeding. I did not tolerate chemo at all, I was in and out of the hospital during the entire time I was taking it. It has caused me to have nerve damage and go into heart failure. So now I will have to take heart pills for the rest of my life. I already have hot flashes,night sweats(very bad) and trouble sleeping because of the chemo. I've been told that the tamoxifen will cause me to gain weight and possibly loss my hair. Also, I've been told that you can develop liver and thyroid problems. My body is totally messed up from the chemo and I don't want to cause it no more harm. I'm 47 years old and I have always weighed no more than 125 pounds. I do not want to gain excessive weight along with all the negative things that go with tamoxfin.        

[Bloo]

Sorry matey it looks like email addresses cant be given :(

[Bloo]

I had a lumpectomy for a tumour the size of a golf ball in 2002, my nodes were removed and half were cancerous.  My treatment included chemo, radiation, hysterectomy then in dec of 2002 started tamoxifen for 5 years.  The symptoms i had included, weight gain - i went from 48 kg to 69kg, I ached in all my joints, had no energy or enthusiasm for anything, suffered memory loss, poor concentration and coordination, terrible depression and mood swings.  I finished the tamoxifen in dec 2007 and started femara.  Today I now weigh 60kg so the weight is dropping off nicely :D.  I still hurt in all my joints and my left arm (where the nodes were taken) feels achy and heavy with pins and needles.  My mind is a lot clearer and i dont feel so depressed anymore.  I actually caught myself laughing at nothing inparticular :D
I am mainly addressing your question to point out a side effect that has popped up in this last week that i wasnt notified about.  I have developed Gallstones.  Apparently 39% of women taking tamoxifen for just 3 years developed gallstones.  If you decide to take tamoxifen, speak to a dietitian to develop a low fat, low spicy diet while taking the medication.  Believe me I wish I had, the pain is worse than anything i have experienced during my little cancer adventure.  Warmest thoughts go to you and best wishes for your continued treatment.  My email is ***@**** if you would like a friend that has travelled your path :D

[lhughes]

If you have an ER/PR+ tumor, that's the recommended protocol.  However, if you are having your ovaries removed with your uterus, then your options change.  You can take the other drug....Reloxifen? or one of the other post-menopausal drugs, I would think.

Have you re-discussed this with your onc after the decision to do the hysterectomy?

I'm so sorry you had such a time with all this.  I would go back and readdress the issue with your doc about what the options are after the hysterectomy.

Good Luck!

PS...I'm a year and half into Tamoxifen (premenopause) and also take Effexor for the mood swings and hot flashes.  Weight gain has definitely hit and is now a serious challenge.  Ugh.